Five Oh Four...or...Diabetes & the Annoying Orange

We had our meeting...the 504 plan meeting, that is.  All went well.

I am so glad that we started having a plan right from the beginning of kindergarten.  I was apprehensive about it back then.  I remember asking the only other family with type 1 at our school regarding their daughter's plan.  She was considerably older than C.  They had never done one.  The Health Aide said there was no need for one.  The nurse agreed.  But something told me, though these people had C's best interest at heart...and, they are lovely people...I needed to protect my little type 1 kid's rights, in writing.

Each year, the plan is tweaked just a bit, to accommodate a growing kid.  As I think back over the last 3 years, I am pretty amazed at how C has grown in her self-management of this disease!  Don't get me wrong.  She will always be able to count on me to be a part of it all.  I read plenty of grown-up diabetes blogs to know she will continually need a strong support system even when she's an adult.  I am just in wonder sometimes, when she demonstrates a deeper understanding of this crazy thing called diabetes!

So...back to the five oh four...

Really, the only changes this year included the point that one of her parents or designated caregiver must be allowed to ride with her on the bus, for field trips.  There had been a couple instances last year that made me feel that it had better be stated in our plan.  The comments and stares from other parents don't really bother me (kind of).  But when her teacher tells me on each field trip day that I'll be allowed to ride on the bus "if there's room," I figured we should include this little stipulation.

Another small change was the simple added statement:  C will work toward testing and treating out-of-range blood glucose in the classroom.  By 4th and 5th grade, I don't want her to miss any instructional time, unnecessarily.  I really just wanted to mention it to the nurse and principal so they have an idea that the time is coming.

During last year's meeting, I seriously wanted the 2nd grade team of teachers to all handle the glucagon kit and be educated about when and how to use it.  It was quite a hurdle for me.  Maybe this year's teacher expected it. He had no qualms about it.  He went for it!  It almost seemed like he couldn't wait to give that orange an injection! Maybe he had heard about this mom who insisted on teaching the staff about how to inject glucagon into her daughter using an orange. Who knows?

I ended up sharing about the meeting later that night with the family.  Big C chimed in..."Wouldn't that make a great Annoying Orange episode?!"...

"Diabetes & the Annoying Orange"

You say you've never heard of The Annoying Orange??  You're missing out...or...maybe you don't live with a 13 year old!

School Supplies.

Every year, we receive a packet from the school, giving a suggested supply list for each grade level.  I don't remember going shopping for all these things when I was young.  "Back-to-school shopping" was simply for clothes and shoes.  Maybe there's a conspiracy between the retail stores and the education department!  Or maybe it's just a a sign of the times.  (I mean, these poor teachers don't even have a budget for a box of tissues!)  But, whatever it is, it certainly is exciting for the kids!  So, off to Target, we went...

Here's the suggested list for 3rd grade:

• box of 10 washable markers
• box of colored pencils
• box of #2 pencils
• pack of 3 pink Pearl erasers
• box of 16 or 24 crayons
• pack of 3 glue sticks
• pack of 3 highlighters
• dry erase markers
• pencil sharpener w/shavings catcher
• pack of 3 x 5 cards
• usb drive
• small pencil/supply case
• pair of child scissors
• lined spiral notebook
• 2 reams of white copy paper
• wide-ruled notebook paper
• boxes of tissues
• hand sanitizer
• disinfectant wipes

And, although the above items are important...I paid more attention to the following supply list while back-to-school shopping:

• 2 boxes (Health Office and classroom)
• extra meters
• lancets
• test strips
• glucose tablets
• juice boxes
• extra carb-y snacks(cheese/peanut butter crackers, granola bars, etc.)
• extra site change supplies (quick-serter, reservoirs, infusion sets)
• insulin (kept in H. O. fridge)
• glucagon kits
• emergency directions/picture
• emergency syringes
• extra AAA batteries

The most important school supplies.

Presenting Diabetes to 3rd Graders...

When C was in kindergarten, she helped me create a picture book that taught the class about diabetes.  We shared it with the class in the beginning of the year.  We used it for 1st grade and 2nd grad too.  It was really adorable, if I do say so myself.  And the kids really got into it.  Each year, I would go into the classroom and C would demonstrate a blood sugar check and talk about what life is like with diabetes.

Well, this year, I asked her if she wanted to do that again.  She did want to but thought that our little book is too "baby-ish" for 3rd grade.  "I'll just tell them about it, Mom!"

So, I helped her type up her words in a short explanation.  She wanted to present it herself, no help from me. 

"Can I at least come in and listen?"  I asked. 

"Okay," she smiled.

I'm so very thankful that she has such a courageous spirit.  I would not have wanted to do anything of the sort when I was her age.  The following is what she presented.  (And, of course, she shared her bear and supply box!)

Hi! I’m C and I have type 1 diabetes. I was diagnosed before I was even 2 years old. I got very sick and had to be in the hospital.



Diabetes means that I have a disease. My pancreas doesn’t work well. For you, your pancreas is the organ in your body that makes insulin. Mine, doesn’t. So, I have something called a pump that gives me the insulin I need. When we eat food, we need insulin to help our bodies use the energy from food.


I have to poke my finger to check my blood sugar before I eat food and when I don’t feel well. This number is important and gets put into my pump. My pump is NOT a toy. It’s like a little computer. I tell it how much food I’m going to eat and then it figures out how much insulin I need. My pump helps keep me healthy.


You may see me check my blood sugar in the classroom. It might be because I “feel low.” My number might be too low. This can make me feel sick. To help get my number back up, I need to drink a juice box or some tablets, something that has a lot of sugar. Then my body will feel better.


Most of the time, I will just go to the Health Office to do my checks. I’ll need some good friends to walk with me. It will be great this year to be able to count on all of you to help me. I hope I can help you with something someday too!


The important thing I want to tell you today is that even though I have type 1 diabetes, and even though I need to check my blood sugar, I’m really a lot like you. I am on a soccer team. I like to ride my bike and play with my friends. I just need to take care of my diabetes too.

Back to 3rd Grade

So, the kids went back to school this week.  All things considered, it was a smooth transition.  We officially have a 3rd grader at one school and the 2 boys are at the middle school (6th and 8th grades).  I know that kids all over the world grow up to the next grade each year.  But I find this truly remarkable...right here, under my own nose!

This has been such a reflective summer for me.  It started off in June, when I celebrated my 5 year mark...5 years since my cancer diagnosis.  And even though I thought this time would pass...that I would be able to fold up the last 5 years, neatly, and put them up on a shelf...it's the strangest thing.  I haven't been able to do that.  I'm reminded of it every day.

I was reminded of it on Monday, as I walked onto campus with C.  There we walked, hand in hand, to the classroom where 5 years previously I had walked Big C to 3rd grade.  (Well, different room, but same teacher!)  I remember shaking the young, first-year teacher's hand.  I remember explaining to him about my cancer, as I peered from underneath one of my many hats.  I remember his eyes, big and round as saucers.  "If you could just keep an eye on Big C," I said.  "It's been a tough time on him too."

I remember.

I remember being so thrilled that I felt well enough to take the kids to school that day 5 years ago.  I had already begun my chemo treatments.  Little C was just 3 years old and was still home with me.  I remember thanking God that I was the one to send the boys off to 1st and 3rd grade.  It was a prayer answered.  I remember.

So Monday, my mind was flooded with thoughts of the last 5 years, again.

We had brought by C's supplies to class, earlier the past week and talked diabetes with him.  And, since he is already familiar with our family, the diabetes issue was not a surprise.  We greeted Mr. H.  We talked for just a few minutes.  Soon, we will be scheduling a 504 meeting soon, after things settle down a bit.  I really just wanted to go over the very basics with him.  C handed him a very cute pink box, loaded with D stuff.  Teacher and C decided together where the best place would be for it...easy access to her extra meter, juice boxes, snacks and such.

We shook hands and turned to leave.  He expressed to C how happy he was to see her name on his class list.  "This will be a great year!" he said.  "I remember having Big C in class 5 years ago."

"Yes," I replied.  "I so remember.  This will be a great year!"

A Day in Our Family's Life...with Diabetes

Thanks goes to Karen, my knitting friend, over at Bitter-Sweet, for rallying the bloggers in the DOC for the 1st annual Diabetes Blog Week!  It's an awesome idea.  And she already has a list of 100+ bloggers set to type their hearts out this week!  Way to go Karen!!

And, it's not too late to join in the fun!  Just head over to her blog and let her know you're in...She's even gone the extra mile and given us some great topics.  I totally appreciate that because I could use a little jumpstart this week.  : )

DAY 1:  A Day in Our Family's Life...with Diabetes

6:30     Wake up; get myself together

6:45     Go down the hall...wake up Middle C, wake up Big C, go in and do first bg check on C...123...beautiful!

7:00     Set out breakfast stuff...make lunches...re-stock C's bag...bolus C accordingly...say the words "hurry up!" about 100 times...teeth brushed, hair fixed, sunscreen on...

7:50     Out the door with C and Middle C...pick up one of C's friends

8:00     At school...quick prayer...hugs and kisses...say bye to Middle C...walk w/C to Health Office...drop off diabetes bag and snacks...chat with Health Aide...one more hug to C

8:20     Back home...turn on computer...put a load of laundry in...COFFEE...chat with Big C as he gets ready

8:40     Out the door with Big C...pick up one of his friends

8:50     Drop off the boys at middle school crosswalk  (no hugs in public...just a "see ya later" and a "have a great day!"...got my hug at home!)

9:00     Back home...back to work

9:45     Get a call from school:  C's at 101...Health Aide will bolus for a 10 gram snack

9:50     work, cleaning, laundry, errands

11:45   Get a call from school:  C's at 89...Health Aide will bolus for 31 gram lunch

12:00   Lunch for me!!

1:00     Get a call from school:  C's at 167...good number prior to PE class...no correction bolus...back to work for me

2:05     Pick up C and little friend...drop friend home

2:15     At home...wash up...bg check:  118...bolus for snack...18 grams...start homework

2:50     Pick up Middle C

3:00     Finish up snacks...homework...piano practice...talk about the day

3:30     Pick up Big C...rinse and repeat!

3:45     bg check:  178...good number prior to gymnastics...detach her from the pump

4:00     Take C to gymnastics class...hang around class with boys dressed in baseball practice clothes of course!...leave class to drop off Middle C to his practice

4:45     Back to gymnastics to pick up C...bg check:  113...perfect!...re-attach pump...

5:00     Drop Big C off at his practice

5:15     Back home to dinner already prepared in the crock pot...fix salad...C sets the table

6:30     Everyone's back home including the husband...bg check:  100 (love that #!)...DINNER!

7:00     Dishes...showers (unhook C from pump..."free shower" perhaps?)...finish homework...TV...relaxing...site change for C

8:30     Goodnight to C and Middle C

9:00     Goodnight to Big C

9:30     Bg check:  125...relax...finish up computer work...TV shows...

11:00   Check on kids...one more bg check:  119

Sleep...

Okay...I confess that the above scheduled day has NEVER happened.  Maybe it is my perfect day with diabetes...Maybe it's what I'd like to experience on a regular basis, with diabetes.  But the truth is:  there are no typical days with this disease.  There are those times when C will have several in-range numbers in a row...and it's awesome!  And, those readings of "100"...love them!  (Sometimes we love them so much, we take pictures of the meter!!)  But honestly, diabetes does not behave in any typical pattern day to day.  In fact, C could eat the exact same foods, same amounts, same boluses of insulin...even the same amount and intensity of activity and get a huge range of numbers.

It's tiring.  It's frustrating.  And sometimes, it's very unmanageable.  But, we persevere.  We must.  We continue to strive for those in-range numbers, 70-120 or so...

On many days, there are mistakes made.  C's diabetes bag might be forgotten at home.  I might overlook that she's down to just 1 test strip.  There have been countless trips back to school.  The nurse might be absent and the checks are up to me to do.  There have been mornings when we've forgotten to bolus for breakfast and she ends up at 427.  I've raced down to school to do emergency site changes when the tubing has major air trapped in it or her site was pulled out at recess.  Or, maybe she's had a couple big numbers in a row and, no matter, how much we correct her, she just doesn't come down.

So, a day in our family's life...with diabetes?  It's different every day.  It keeps us on our toes. 

...as for coming home to a prepared meal in the crock pot??...rarely does that happen!

THE 504

The last post was all about preparing for our 504 plan...tweeking it and preparing for it mentally.

Well, we finally met yesterday after school...the principal, teacher, me, nurse, health aide, and of course, C. We went over the plan quite quickly since there really weren't too many changes except for recess and lunch times. We also included that C would be able to work her pump and punch in carb numbers with the supervision of the health aide during times when the nurse may not be on campus. I was fine with all of it. But I was on edge throughout the whole meeting.

When the principal asked me if there were any other issues I needed to address, I said "yes" before she could even finish the question.

I told her, "I brought several old, expired glucagon kits with me. And I really want to personally walk the entire 2nd grade team through the process of why and how you would use it." (At this time, I told C to go out to the front office and start on her homework.)

"Oh," she said. "There's such a remote possibil..." I didn't even allow her to finish the sentence. Rude, I know. But for the last two years I have been carrying around this weight...this heavy, awkward thought "I don't know if anyone here, caring for C, really knows how to administer glucagon or not."

Now, don't get me wrong. They say they know. And common sense tells me that the nurse has the knowledge. And the sweet health aide says she's practiced with it before. But what about the teachers? And what if one of them were absent? Or two of them? What if there were a true emergency...a lockdown...for hours? What if C simply didn't eat the carbs at lunch that were inserted into the pump? I could go on and on. Hypotheticals all day long. I'm good at it!

Well before you could say "hypoglycemia," the two other 2nd grade teachers were in the office too. I pulled out some expired kits and an orange. And, as the talk about syringes and needles began, I started feeling very overwhelmed. There were some giggles of discomfort. The nurse caught my eyes, which were now beginning to fill with tears. I don't know what came over me. She quieted everyone down and made the point that this was serious stuff. "This is your child we're talking about. I understand how you must feel about putting this trust in us for her safety." The room was silent.

"Yes," I said. "It's very hard...unexplainable, really." I told all 6 people in the room now, that I need to show them how to use this and watch them open the kit, hold the syringe and practice giving a shot to an orange. I need to do this because it's the only thing I can do to help myself feel better about leaving C at school all day. How many times have I heard people say "Oh, I don't think I could ever give someone a shot!" And, I told them, right then and there, "If someone is taking responsibility for my daughter, whoever they are, they'd better be willing and able to do this." And, of course they all agreed. They are actually a bunch of wonderful people.

And, so, briefly, I described the situation in which glucagon would be needed. A remote possibility? I suppose. But I remember it like yesterday, the time that C did need it. She was only 2 1/2. It leaves a lump in my throat to think about it, still.

As we filed out of the principal's office, the health aide gave me a hug. And in that hug, I felt as if a fifty-pound vest was taken from me. My head felt a little clearer. I hadn't noticed, until that moment, how consumed I had been with these thoughts.

Diabetes. Constant management. Constant stress. Maybe just a tiny bit less now.

I'll Take the #504 with a Side of Glucagon Training, Thanks

Several years before C started school, I had heard about a "504 Plan." I put it out of mind, on the back burner. She was still so young and I would be going to preschool with her so I didn't think much about her legal rights and such.

Then came kindergarten. I had to really wean myself away from the classroom. I ran office errands for the teachers. Ran off papers. Collated homework packs. I'd spy into the room now and then. Meet C in the Health Office for finger checks. And then it hit me. She needs a 504 plan. I need the 504 plan. If I seriously want to be able to leave the campus and, oh, I don't know, go to work, then we needed a plan laid out in black and white to cover all the diabetes bases. Even though the school personnel was wonderful and loving, I needed to put a plan in place for C's protection under the law. I don't know why, but I felt weird about doing this. Maybe it kind of stated loudly, I DON'T TRUST YOU PEOPLE! I don't know.

The only other D mom I knew at the school just left that year! Her daughter moved up to middle school. So I called her. A 504? They had never done one! Wow, I couldn't believe it. She was definitely looking into it now that her daughter was at the middle school.

Hmmm? What to do? I went online and started my search...anything to help me with a plan. I found some to look at, but it definitely had to be tailored to C's situation. CHLA gave me some guidelines too. The site, childrenwithdiabetes.com had tons of examples. And, so, we met to go over the plan with the principal, nurse, teacher and, of course, C. I leaned upon the experience of the principal. After all, her own daughter, now grown, has type 1 diabetes! You would think that would be such a soothing support. And, it is, to a point. But she's the principal and has way more to think about than just my daughter. But, I went with a standard form that she presented. We filled in the blanks, signed it and that was that. I had a difficult time enforcing my wish for glucagon to be kept in the classroom as well as in the office. My initiative to "teach" some staff about C's illness and how to give a glucagon injection was dismissed.

Last year went along without too many diabetes glitches. There was a time when all the first grades were going to do a food celebration of some sort and I wasn't notified in advance. There was a field trip that, post-surgery, I could not go on...and it ruffled some district feathers. But things worked out and they actually hired a "medical" person to accompany C. Maybe a few other times of substitutes rewarding kids all day with candy...that sort of thing. But we got through it okay.

This year, I tweaked the plan just slightly. I worded it so that the entire 2nd grade team, health aide office workers and such, will need to be trained on glucagon injections. This is the one thing that creates so many hypothetical crazy scenarios reeling around in my brain. My biggest fear: a severe hypoglycemic episode and no one around who knows what to do. Although, we've only needed to use it one time on C back when she was just 2 1/2 years old, I know it poses a daily threat to her. The reasons she may experience such a severe low are numerous. So this is the big focus for me...this time round. We will be meeting soon, hopefully this week. I'll put my diabetes game face on. This is such a critical step for me to take. I need the comfort of knowing that several people on campus understand the importance of this facet of diabetes.

So, yes, my order this year..."I'll take the #504 with a side of glucagon training, please. Thanks."

The First Day of School

Monday was the first day of school. It went something like this:

6:30 am I woke up and showered.

6:45 am Woke up middle C and C and checked her bg...155...not horrible...corrected.

Dressed. Breakfasted. Made lunches. Woke up big C.

7:35 am Out the door. Busy, busy parking lot...parked way far away.

Grabbed bags o' diabetes stuff. "Got your bag, C?" "Yes, mom!"

7:45 am At the Health Office. "Where's your bag?" "In the car." Ug. Back to car.

Back to Office. Talked with Health Aide. Nurse won't be here today! Must come and do all bg checks. Huh? Shook hands with middle C's teacher. Squeezed middle C good-bye. Walked with C to her new room. : ) Smiled at teacher. (We met and talked diabetes last week.) Left extra kit in classroom.

8:05 am Chatted with a few moms I haven't seen all summer.

8:20 am Back at home with big C. Had COFFEE. 1 more cup.

8:30 am Out the door. Picked up big C's friend. Dropped off at crosswalk of middle school. "Bye, sweetheart. Have a good day. I love you!" "Yea."

8:45 am To the grocery store. Although I just went 2 days ago, we are running out of food!

Raced home and put away perishable food.

9:35 am Off to school to do recess bg check...206...high, but we dealt with it. "Love you bug...see you at lunch!" Chatted with Health Aide.

10:00 am Back home. Put away rest of groceries. Continued with the endless laundry. Answered some emails. Processed some orders. Twittered some, of course.

11:35 am Back to school for lunch bg check...133...not bad. Corrected for lunch.

12:00 noon Back home. More computer time. Thought about 1:00 pm check...never mentioned this to new teacher. Maybe she'll be fine? Unless they play outside...so hot...she'll go low.

12:15 pm Called school. Talked with Health Aide. Decided on "in class" bg check at 1:30 pm. She'll call me. Okay.

12:30 pm Lunch for me...yay!

12:50 pm Out the door to pick up big C...middle schoolers have minimum day for Back-to-School Night...tonight!

1:15 pm Back home. Talked with big C about the day. He was unusually talk-y...so I took advantage. I heard all about his schedule and what friends are where...and what teachers are nice, mean, cool, etc.. Good times!

1:30 pm Get a call from school. C's bg wass...117...wow! Breathe.

2:00 pm Out the door to pick up C. Gathered bag from office. Hugged my big 2nd grader. Talked with teacher. "Everything went great!" Head home.

2:15 pm I heard all about C's new classroom. Pet turtles. Classroom helpers. "I got a lollipop, mom!" *sigh* "Let's save it for a low." bg check...152...okay. Correct and snack time.

2:45 pm Out the door to pick up middle C. (Yes, 3 different pick ups.)

3:00 pm A great 1st day in 5th grade! I heard all about the new teacher. Reward systems. Field trip plans. Who's in what class. All exciting! Snack time and relax.

3:30 pm "Any homework?" "No," "No," "No." But I have 3 big piles of papers to fill out and sign.

_____________________

It was exciting...the first day of school. Exhausting, but exciting. I count it a real blessing that I can be the taxi service for my kids. (I will need to remind myself of this blessing throughout the year!) There's something kind of magical about this time of year. I don't know...Maybe it's getting back into a routine that is comforting. Maybe it's seeing friends again. But, what I love the most is that feeling of great anticipation for what this school year can hold. The possibilities of learning, of growing. It's a great feeling. I think back a year--and how much my kids have grown and learned since then. Oh, the possibilities!